Tysabri

USER REVIEWS

Comment from: Chronnie35-44on Treatment for less than 1 month Published: October 22

had tried all other drugs for Crohn's, after first infusion was extremely listless next day and breathing was raspy went to Dr had xray determined it was Pneunomia. During 2nd infusion 14 minutes into it suffered severe anaphylactic reaction, could not breathe, entire body in extreme pain(and I have high tolerence)came to in ICU where Dr told me test showed I had mild heart attack(never had any heart problems) and I had suffered some kidney damage and time would tell how it would affect me. Heart is now fine kidneys are still being watched closely,I also have some mild ladder control issues, I lost 90% of my hair and an still(7 months later) on IV antibiotics for a lung infection that appeared right after the anaphylaxis. I w3as more worried about the PML than a severe reaction. I would not tell anyone with CD not to try this each one of us is different, I just would like them to know my reaction. I will start Cimzia in a couple of weeks and am praying for imptovement with no bad side effects.

Comment from: 45-54on Treatment for 1-2 years Published: January 02

Very satisfied. Some dizziness while getting the IV and after receiving.

Comment from: lentra55-64on Treatment for 1-2 years Published: October 07

Have had Crohns for 40 years, multiple resections, only 100cm of small bowel left, cannot afford any further resections. Tried Remicade, Humira and Cimzia to no avail. Been on Tysabri for 18 mos and in remission all this time. Also had leaking fistula which closed up on Tysabri. Has been a lifesaver for me, feeling good, put on weight and no major side effects.

Comment from: Eric45-54on Treatment for 1-6 months Published: February 12

DX with Crohn's in Mid-1980's. Have had multiple resections, down to 50% of my small bowel left. Did Remicade and Humira infusions. Both failed. Have had 2 Tysabri infusions so far. Latest one caused me to pass out. Flow rate too high. Felt O.K. after the rate was adjusted. I realize the potential side effects, but still feel like I should give this a try. I have great G.I. Docs here to assist me. Good, careing people. To those of you who have Crohn's, do not give up! Never give Up! Thx, Eric.

Comment from: richieg65-71on Treatment for 1-6 months Published: July 08

once every 4 weeks is just right for me i am old and dont drive anymore and i have not had any attacks from the crohns disease that has made me suffer for years

Comment from: Cindy45-54on Treatment for 1-2 years Published: January 20

works very well. No relapes in 13 months.

Comment from: Aunttita25-34on Treatment for 1-6 months Published: March 20

I have RRMS and I have had 4 infusions of Tysabri. I was on Betaseron for a whole year and it was not working for me. I formed new lesions on my brain and spine and one of my old lesions had started to become a black hole. I have had 2 relapses since December. Lost part of my vision the week of Christmas and another episode just a week and half ago, that has pushed me to stop working. I am very fatigued, numb all over, but Thank God I can walk without assistance right now. I've had to have Solu-Medrol along with my Tysabri to help with the relapse. No major side effects with this drug and I like the one time infusion rather than a self injection every other night.

Comment from: [email protected] Treatment for 1-2 years Published: January 26

THIS HAS BEEN MUCH BETTER THAN MULTIPLE WEEKLY INJECTIONS BUT I HAVENT SEEN ANY CHANGE IN DISEASE ACTIVITY.

Comment from: juju35-44on Treatment for less than 1 month Published: June 25

HI, I am about to start using this drug in the next month - have to be off avonnex injections for 1 month first, I am based in Australia have had MS for over 10years, been on rebiff and avonnex, but have had terrbile side effect. Can anbody tell me the side effects of this drug and how quickly they quick in after the inufusion - thanks julie

Comment from: EvaMaria25-34on Treatment for 1-6 months Published: July 14

Got diagnosed with MS in 2010. Immediately started with Tysabri because of severe progression (spams, eyesight, hand, legs problems and terrible pain). It takes about 3-6 months to see if it's working. Last MRI showed that my brain now is free from inflammation. And symtoms have dramatically improved for me. :-)Happy this drug is on the market. Easy to use..only once every 4 weeks. Usually get nautious some time afterwards, but I don't get too bothered about that seen the advantages it has given me.

Comment from: ohboynotagain45-54on Treatment for 1-6 months Published: April 15

I have used Avonex,Copaxone (sice 1999). Recently I was using Copaxone (Since 2001)I went for a MRI and was told the MS lesion had increased and there was signs that there was inflamation, so I started taking TYSABRI (IV once a month)out of the 3 treatment this one seems to be the best I feel better then I did.

Comment from: angelc45-54on Treatment for 6 months to - 1 year Published: October 17

husband diagnosed in 2000. have gone through all "abc's" for ms. he now must continuosly use walker,versus not so much befor tys. next trmt will be 8th. we know he will not get any better, a plateau would be nice for him. he is 56 and is feeling every bit of at least 65.

Comment from: Maria25-34on Treatment for 6 months to - 1 year Published: December 28

The Medication have work very well. I have it better than before for sure. but now its my worst nightmare, cause Im pregnant, and my doctor want an abort :( So Ellen If you're here (still), could you please write how your birth and baby' is ? This is a dreambaby, and I would like to hear any news, before I make up my mind please. Hope everything is fine :) Im 6 weeks pregnant, and I got tysabri last time d. 16 nov. So its 6 weeks ago. Hope anyone know something about pregnancy and tysabri :)

Comment from: Mary55-64on Treatment for 2-5 years Published: November 17

O.K. better than taking shots. Have had some joint pain,otherwise doing well. Mobile. MRI's have not improved but not worse. Concerned about PML.Worried about not being able to stop use for fear of m.s. worsening.

Comment from: D55-64on Treatment for 1-2 years Published: May 21

DX 10 yrs ago with MS, Have been on all the Meds for MS, Copaxone for 5 yrs. I feel better a few days after the infusion but the effect of Tysabri seems to ware off after 2 1/2 weeks. Then it back to feeling miserable, my balance is off. A recent blood workup shows my liver funtions are off (tysabri effect??) May have to go back to Copaxone. Never had any bad effects with Copaxone.

Comment from: Amelia35-44on Treatment for less than 1 month Published: August 10

Diagnosed in 2004, Tysabri is the 4th medication I have tried. Within two days of taking my first treatment I was seeing an improvement in the way I walked. I am so excited to see what lies ahead!

Comment from: Ralph 100k55-64on Treatment for 2-5 years Published: October 26

I used it for 31 infusions..Excellent ..I even ran a half marathon at 61 years 2hr 20min. Had to stop because of JC virus .I was given Gilenya. Disaster! I am now in a Wheelchair half the time

Comment from: wizeowl55-64on Treatment for 1-6 months Published: December 06

Ihave had 3 infusions had bad reaction on second infusion. Dr pre medicated me with liquid benadrill and hydrcortozone. have taken had 10 feet if inst. removed been on remicade, humira and many other drugs, Tysabri is working :)

Comment from: Amanda22425-34on Treatment for 2-5 years Published: August 16

This has been the best medication ever! I don't have to give myself daily or weekly shots with a ton of side effects. I have zero side effects with Tysabri, and have been on it since it first became available. I have only had one MS relapse since beginning this treatment, and my neurologist says I am one of the healthiest MS patients she has ever had.

Comment from: Mommieangie35-44on Treatment for 10+ years Published: September 10

I have tried several different medications. Nothing ever worked very long. Dr. Even put me on steriods at one point every 10 days for 3 days, i am now allergic to steriods. I have had ms pretty much my whole life, first grade was my first attack drs did not have a clue what it was that was early 80s but i eventually diagnosed in 2004 with rrms. I have been taking tysabri for clise to 12 yrs now. No new lesions, no side effect that i cant handle. I am tired about a week before and then 2 days after i also get a slight headache from every month. Other than that its all good.

Comment from: JoeyGK45-54on Treatment for 1-6 months Published: November 07

Other than persistent Nausea, no real side effects. This is my 5th treatment protocol and the best one so far.

Comment from: pm55-64on Treatment for 5-10 years Published: April 10

started on drug for six years ago since failed another treatment one relapse during that time. no new lesions since on drug. 24hours after I am wiped out but other than that all good

Comment from: MS201435-44on Treatment for 2-5 years Published: June 10

I have had positive experiences with Tysabri. I have not had any relapses since 2014. That is when I was diagnosed. My two year mark will be July 2016. I remain cautious about PML and the JC virus popping up. Right now I am negative for both.

Comment from: Beth25-34on Treatment for 5-10 years Published: May 23

Loved this treatment! I became spoiled because while on Tysabri for 6 years it was like i never had MS. After having to switch due to my JCV level increase I really miss it

Comment from: ?35-44on Treatment for 1-2 years Published: February 06

I am JC Virus neg so I will continue drug. I have spasms in my legs and back and must have Botox shots. I wish the drug would help with pain. BUT, I have not had a major attack since starting the drug. Dr. wants me to stay with the plan even if I become positive which I don't think I want to do. Tried Gilenia but had to get off because the tips of my feet were actually red and they thought I had a reaction. It went away but a year after being on Tysabri, it is back. Wasn't the pill after all but we have to figure out what this is. I and my Dr. had hope that Tysabri would help my symptoms in addition to avoiding the attacks.

QUESTION

What kind of disease is multiple sclerosis? See Answer
Comment from: 25-34on Treatment for 6 months to - 1 year Published: December 26

I am 28 years old and I have been living with ms for 3 years finally getting dignosed in 2010! This drug has did anything but made my situation worser!

References

Medical Editor: John P. Cunha, DO, FACOEP

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